Saturday, June 29, 2013

Sometimes, It's Just Plain Heartbreaking

The absolute best part of starting this blog has been the relationships I've made with other wives to guys in wheelchairs. One of the closest relationships I've built is with Gentrie. Gentrie is married to Matt. He has been a quadriplegic for 20 years, and has recently been dealing with awful pain. Gentrie sent me this. It is heavy. It is raw. It is real.
So is her love and dedication to her husband. The pain is relentless. Her dedication meets it, every time.

These are the things we share. This is an intimate peek into our lives and the things we quad wives talk about.

And why we need each other. And why we need God.

It is not easy. Some days are bad. Really bad. Sure, there is joy. It's not always this tough for everyone. Every journey is different. Michael and I have it so easy compared to may others.

Our hearts break for them and with them. We fall asleep praying for them. But this raw, real, intimate stuff is the stuff of text messages, emails and Facebook messages that make us sisters.

Welcome to our world.

Click here to listen to Gentrie's heart.


I don't know what to do. My heart is breaking and grieving for all the people that suffer.

What do you as you watch a person suffer? Watch them writhe and sweat and cry out to God for mercy. What do you do as you sit comfortably in your own temporal dwelling of flesh and bone? Grimace and feel guilty. What do you do after you pray, you hold it together, champion, advocate and cheerlead your agonizing partner in this life? What do you do as you witness his tangible fear to keep living, intertwined with his ethereal fear of dying, fear of failure, fear of mediocrity? Its display is inescapable as you bear witness to it in the human you love and feel as much as your own being. 

Where do you go to cry and screech and wail and break and beg? Where do your dreams go? Your plans for 'us'? Your fantasies of holding hands? Sitting near each other on the same piece of furniture? Sleeping cold butt to cold butt in the same bed? Or even the same room. After the endless disappointing calls and pleads to doctor after doctor after doctor after doctor after doctor after doctor and doctor after doctor after doctor after administrator after therapist and parent, sister, father, best friend, lawyer, policy maker, receptionist, nurse, acupuncturist, colleague, stranger, neighbor and fellow caregiver? Where is the play book? The rule book? The script? The end? The reason? The answer?

Who tells you it gets better? It gets easier? It's temporary? That he will overcome? That there is a reason? A solution? A grand destiny? That there is help? 

Why is this beautiful soul shrouded in six failing feet two twisted inches, eighty seven startling pounds of physical flesh and deformed bone set on punishing him for an offense unknown? For an infinite time.
Why are there 185 doctor visits in 5 years? 1000s of pills? Unimaginable side effects? 10 failed surgeries and procedures? Unimaginable tears and desperation? Foul stench of burst colostomy bags in the middle of the night? Ruptured gushing cardiac picc lines on the brand new mattress? Blood pressure of 188/108 to a 30/50 dip? Why are there 20 years of crippling daily seizures of the bladder and teeterings of a stroke? Why are there ice pics of piercing pain from shoulder to finger tip? Why isn't there movement below the nips? This is inconvenient but mostly why people frown. Why are protective finger and toe nails fallen out? A result of shock? Why are there spasms that twist 37 years of life into a frozen fetal position every morning? Pressure sores, leg bags, catheters, snapped femurs...
cadaver bones, plates, screws, rods...
scoliosis, arthritis, osteoporosis, autonomic dysreflexia, malnourishment...
depression, tendonitis, neuropathy, colostomy...emergency surgery, endoscopy, sonogram,KUB...
hypogastric plexus anomaly...quadriplegia of the worst degree. 
Why do doctors and hospitals turn you away and look past you with down cast eyes and hurried glances? Why aren't my shoulders capable of handling this?

How is he still smiling? How is he still loving? How is he still going? How do I take the yoke and carry the burden and remain stoic?

When does he get his chance? When will it stop? When does he get to begin again? When will we stop asking why? When do we just accept it? When will my heart quit grieving and gripping me with paralyzing emotion? When will it be worse? 

 New normal? Silver lining? Am I culpable? Is this dying?

Is this preparation for our true lives? Is it true we are aliens here and only prisoners of our own devices? Waiting to discover what heaven is.

I cry softly at these tipping points. I cry violently when my body warrants it.

Questions don't matter in the midst of the splatter. He is fitfully asleep and I ponder our mutual disaster. 7,587 days and nights without privacy. Do you know what's stolen? Money, checks, medicine, prescriptions right from the pharmacy...
dignity, opportunity, normalcy...
child bearing and therefore child rearing, parking spots, girls that are hot...
always privacy, humanity, vehicles, clothes, wheelchairs, too...
all while in front of me.

Not being able to walk? That's inconvenient. It's everything else, that's disabling. Cobweb like nerves operated on.  What's left remaining  is paper thin muscle tissue and a spirit treaded upon. I'm gonna remind you one more time, that handicap spot? That's mine. The one you're taking. I will let you have it but it's a mistake you are making. Do it again, I'm not fakin', upon your return, it's me you're disgracing. 

6 comments:

Blogette said...

Dana and Gentrie - thanks for the post. Its real. I'm standing in the gap with you Gentrie

Cheri said...

Gentrie, my heart cries with yours. Why do they have nerve pain when they so much else to deal with. I always cry at the unfairness of it. I don't know how anyone can do this without God.
Praying with and for you both.

Dennis said...

All I can say, as I hold back the tears, is I am praying.

Fuzzy said...

My heart breaks for you as well. This post definitely brought me to tears. I am in a new situation and am trying to sort through the emotions every day. Hearing the stories of others, and sharing my own definitely helps. Thank you so much for sharing so openly.

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Jaimie Lee Moore said...

Amazing. Nothing but love.